Monday, July 7, 2014

Serenity

Grant me the serenity

to accept the things I cannot change,

the courage to change the things I
can,

and the wisdom to know the
difference.

We’ve all seen & heard this before. It’s the foundation for any 12-step program,
and in some form or another, it’s really at the core of any self-improvement
plan. Unfortunately, it’s not always as
easy as it sounds.

I usually focus on that second part: changing the things I can.
Whether it’s actually doing something different or simply finding a different
way to approach things, I feel like I’m doing something constructive. At a minimum, I can always change the way I
think about the situation. I emphasize
the positives – what’s still good in my life when things seem to be going bad,
what I still have when I’m grieving over a loss, and what still makes me smile
when I am ready to cry.

It’s that first part that I’m struggling with right now: accepting
the things I cannot change. Whether
it’s denial, wishful thinking, or just plain stubbornness, I’m having a really hard
time accepting my new reality. Honestly,
it’s hard enough to just say it. I find euphemisms, or don’t even say it at
all.

“ … what I’ve got going on … ”

“ … all my issues … ”

“ … my situation … ”

“ … all this health crap … “

I can say that I’m in pain, but that’s only a symptom. I can say that everything hurts, but people just think I’m exaggerating. I’ve even gotten to the point where I can say
the names: I have Sarcoidosis and Fibromyalgia (and a handful of other
health issues) … but most people don’t really understand what either of those
terms mean, so in a way, that doesn’t count.
What I have a much harder time saying is …

I am sick.

It’s not like a cold or the flu, which I’d recover from in a few
days. I’m in pain, but it’s not from an
injury that will heal. My body is
attacking me from the inside, but there’s nothing the doctors can cut out to
make it stop. I have an autoimmune
disease and a complex chronic illness – neither of which are fully understood
by doctors, and neither of which has a cure. To put it bluntly, this is some serious $h*t.
It leads to degeneration, deformity, and disability.

Disability.

That’s another word I’m having a tough time saying, let alone
accepting. I don’t want to be disabled (not that anyone does).
I’ve spent such a long time fighting it, “working through the pain,”
going further, longer, faster, doing more than what a normal/healthy person
could do (can we say overcompensating?),
and then really paying for it
afterwards. If someone asked “can you do
this?” I didn’t know how to say “no, I can’t.” I did whatever was asked of me and more: the
adrenaline helped me get through the moment, but as soon as it was over, I crashed
… hard. After the last few big events
(about a year ago), I was completely incapacitated for days at a time.

Things have only gotten worse since then, and now it’s not just a
matter of the consequences after overexertion.
All too often it hurts too much to get up and go for no reason at all. I continually discover things I’m no longer able to do, from little
things like opening a jar to life-altering things like working full time. I do the best I can to focus on the positive,
but this is a reality that I must face … and accept.

A quick Google search gives this simple, straightforward definition:

dis·a·bil·i·ty

/ˌdisəˈbilitē/

noun

noun: disability;
plural noun: disabilities

a physical or mental condition that limits a person's
movements, senses, or activities.

· a disadvantage or
handicap, especially one imposed or recognized by the law.

"he had to
quit his job and go on disability"

It should be as simple as that.
I do have “a physical …
condition that limits [my] movements, senses, or activities.” But it’s not simple. In fact,
this is possibly the hardest thing I’ve ever had to say. I’m realizing that no matter how much I want
to, this is something I cannot change … so it’s something I have to try to
accept.

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.